tidewaterreview.com

Ask the Expert: End-of-life spending

Investigative journalist Amanda Bennett probes her family's journey through the complex and confusing world of illness, treatment and end-of-life care

By Bonnie Miller Rubin, Chicago Tribune reporter

June 27, 2012

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How much money should be spent to prolong a life?

That's what Amanda Bennett, a Pulitzer Prize-winning journalist set out to determine following her husband's death from a rare kidney cancer in 2007. Bennett's new book, "The Cost of Hope" (Random House) started as a story called "Lessons of a $618,616 Death" for Bloomberg News, where she is in charge of investigations. She navigates the alien and frightening world of illness and her insights have particular relevance at a time when debate rages about the role of government in health care.

Q: Did you ever get a satisfactory answer to your question about how much care should we consume — especially on end-of-life care?

A: I never got a full answer. We never really got a clear idea about what things cost. ... We chose to take everything because it was basically free. Over the course of his seven-year illness, I would have thought he had a dozen or so CT scans; he actually had 76 scans. They were covered, so why not? Were they ordered up for a good reason? Did we need them all? I don't think so.

Q: You tracked down all of the physicians who treated your husband, Terence Foley, and reviewed their decisions. Did they make sense, given the information you had at the time?

A: I think so ... but I was struck with how confusing the process turned out to be. ... I needed to find out "Where were the best hospitals? Who were the best experts? How do I get them on the phone? And if you pick this expert, which treatment are they going to favor?" I have pretty good investigative skills, but this was like doing a massive research project at the same time I had a sick husband, a job, two kids and a dog.

Q: What would you do differently?

A: I think we were really glad we were aggressive. He wasn't done living his life, we had two young children and I don't regret what we did ... but I do think I would have been more realistic about what some of these treatments could and could not do. I was looking for something to fix him, not prolong his life for a couple months.

Q: Do you have any regrets?

A: That we kept on being so aggressive and pushed a little too far. When I did realize (that he was going to die), it was too late to say goodbye because he was in a coma. So, I wish that maybe we had some more realistic conversations during the process.

Q: Can you be more specific?

A: I think we'd be more thoughtful. ... Some treatments made him really, really sick. So, even if it extends his life, will he wish he were dead? If treatment makes quality of life so unbearable ... what's the point? Since no one is immortal, maybe we need to think more about "Did we choose the right path?" instead of "Did we do everything we could?"

Q: Do you think that medicine is behind all this aggressive and excessive treatment?

A: We're all caught in a machine. ... It's not an evil machine, but it's one that moves forward. It doesn't feel like the system is designed for me — or for someone who is sick. We need to focus it around patients, not practices or hospitals. After I wrote the story for Bloomberg, I heard from so many people whose stories sounded just like mine. ... We need to start pushing from the bottom to get the system to recognize us as intelligent and informed consumers.

Q: What do you think Terence Foley would think of your book? And what did you get out of it?

A: I think he would be so tickled that his experience could benefit other people. As for me, I could go back and use a journalist's skill to figure out important issues and help other people with them. And besides, writing the book also gave me an extra year to be with him.